I have been staring at this blank page for hours, unsure of how to begin. My brain is not able to put this into some order that makes sense, so I am just going to give you info as it pops into my thoughts.
- We had to postpone Doug’s endoscopy because Doug was having dizzy spells and falling over when standing. He was also falling off furniture (in a world where he had never fallen off furniture before; it is why I bought the new couch). Also, when he shakes his head, his eyes started rolling back into his head and I was able to catch it on video. Our regular vet felt we needed to see the neurologist over having the scope done.
- The neurologist confirmed that Doug had deficits. I went in thinking it was likely inner ear. They put that pretty low on the list of things they thought it was. She was very clear that she thought it was serious. Four of the five things she thought it could be (brain tumor, malformed brainstem/spinal cord connection, too much spinal fluid or a brain that was too large for his skull), would be able to be seen on two different MRIs and a spinal tap. We had fasted that day just in case, and none of those test are new to me. Melvin had one MRI and spinal tap; Jake had two. At no point during this conversation did I flinch. We would figure it out.
- She then told me that there was one other thing it could be. A brain disease where the brain stops controlling the dogs body. The first sings are unsteadiness, stumbling, dizziness, uncoordinated eye movements. She said, it was the worst possible diagnosis since it was 100% fatal. All the air left the room. What about it just being an inner ear issue?! She said there was a genetic blood test that took 2-4 weeks to get back. If the test came back positive, we would not need to do the MRI or Spinal Tap. I agreed to have the test to rule it out.
- I waited 26 days for the results. Everyday, watching Doug not getting better on antibiotics and accepting the fact, it was not an inner ear issue.
When Melvin died a month after his 10th birthday, I was heartbroken in a million different ways, one of which was that I would never know old-man-Melvin. When Doug came, I knew the universe was giving me a dog I would have the longest and that even though Melvin didn’t grow old with me, I would get to see what Grandpa Doug was all about. When Jake died, I knew that I would likely never care for a living creature to the extent that I did with him. And that, it was unlikely another of my dogs would go through as much as Jake did. Jake would always be my baby. I also assumed that my heartache with the dogs, had reached a lifetime max.
I was wrong, about a lot of things.
Doug has a fatal, neurodegenerative disease called Neuronal Ceroid Lipofuscionosis (NCL). It turns out I won’t get to know Grandpa Doug after all, the weight of even typing that, suffocates me.
I got the results yesterday.
- Heartache is the bulk of what I feel. Not just the realization that I will lose Doug, but much more so the fact that Doug won’t have the opportunity to be showered with love for many more years to come.
- This disease is very rare. Mostly because breeders test for the mutation before breeding since it is so terrible. I feel actual rage that Doug was likely born to some backyard breeder that didn’t give a shit.
- It being rare leaves me with a ton of unanswered questions. The symptoms are breed specific and there has not been enough Am Staffs reported to have it for me to have much insight into what to expect and when. The neurologist office has seen one other case, our vet has never seen it.
- Every dog, regardless of breed is different. Some dogs decline more slowly, some decline rapidly. Right now, we are throwing out about a year. Give or take, whatever terrible version of math that is.
- All I really know is that it usually strikes Am Staff’s between ages 3-5. Doug is 4. Doug’s brain has already started communicating less with his body, and that will continue. I don’t even know when it started because his hind leg issues have always made him clumsy. He might go blind, he might not. He might not recognize things that should be familiar. It might be painful, it might not cause any pain. Some dogs have seizures. Obviously he is going to be confused as to what is happening to him. The given is that, eventually, his brain will cut ties with his body and mobility. So sometime between today and the day before joy no longer reigns supreme, I will have to say goodbye to my boy.
I will find a way for Doug and I to make a difference. I already plan to write down every symptom, every day. I will take video of his decline. One day, we can help someone else as they journey towards this horrible fate; they will at least have one person who says ‘I understand and here is what I know’. This is one of a million ways that Doug love, will live on. If any of you know any dogs who have had this, especially if they are an Am Staff, PLEASE let me know.
The other way he and I will make a difference, is that we will continue to find the joy in every day we have left together.
There are a few things giving me strength. My family and friends. Melvin, as always, is with me. And I know that when Doug is no longer here, Melvin will be there with him. And Jakie too. When I heard the results, the first thing that I realized was, I don’t have to change a thing to give Doug a beautiful forever. Live a life where if you find out someone is dying, you can rest easier knowing, you are already giving them the very best of who you are.
Lastly, and way more importantly, life is not meant to be measured in length. A long life is never the given. Instead, it is to be measured in width and depth. Doug’s life is infinitely wide and wildly full of joy, and I will never allow for anything but that for him.
I am so heartbroken for you and struggling to avoid thinking of this in terms of fairness, as I’m sure you must be too. At a loss of anything more to say, sending so much love to you and Doug. Thank you for sharing him with us.
Thank you so much for always being here for us. xoxo
WHAT THE ACTUAL FUCK?!?@#$%&!!! This is so not right. Just because you’re the perfect person to take care of a dog with health issues doesn’t mean the universe needs to keep sending terrible things at you & your boys. Seriously, WTF.
Sending love to you, Doug & the boys above. 💕💕💗💖
I will be honest, I have read this 500 times and it has given me so much strength to feel seen and have empathy. I just want to live a little joyful life with him but somehow we will jam it all into how much time we have left. xoxo
Doug found an angel when he found you. 🙏🏻
I feel the same about him. xoxo
My eyes are so leaky right now. I am so sorry to hear this news. My heart has shattered for you. Thank you for always sharing with us.
Omg I’m so sorry for both you and Doug. My mom always says things happen for a reason but sometimes we can’t see the reason. You’re an amazing person and you will do what’s best for Doug and help people going through the same thing in the future. Life’s not easy or fair and it makes me angry and sad you’re having to deal with this. But you are such a strong amazing person, and you have all of our support.
Thank you so, so much. This lifted me up. xoxo
Thank you for always being here with us.
I am crying as I type this. I don’t know you and have never met your boys but I feel like IG, this blog, and Facebook would have made us fast friends had we ever crossed paths. You have put so much love and courage into this post I don’t know if I could be so strong. My heart breaks for you my internet friend. I hope and pray that all goes well for you these next several months.
I think it’s safe to say we are friends! Friends are there in good times and bad and that is you. Thank you for that. xoxo
Oh my gosh, I don’t know what to say. Monroe and I are sending our love to you both. xo
We feel it! xoxo
Noooo! This is so sad. I am glad you are determined to continue to make Doug’s days amazing and to document them for others who might discover their dog has this disease.
Thank you! Helping even one other person will be worth it.
I’ve been trying to figure out what to say to you, but there really isn’t anything. There is so much sadness and anger mixed with such gratitude that you will give him the very best life ever to be had. I’m so sorry that you two won’t have the senior years ahead. My heart is with you both and you will always be in my thoughts. Give that sweet boy a hug from me and consider yourself hugged.
Thank you. I am feeling all the same things but really appreciate your support. xoxo
I just can’t believe this! I’m so very sorry. ❤️
I am so sorry. These things are never fair. You do have a gift for loving dogs through. Through naughtiness, sickness, goodness, right through to the end. It is not a common gift, and the dogs who have received it have been very fortunate indeed.
I really appreciate this, Mary! I laughed at the naughtiness since that is always in abundance! xoxo
My heart is breaking for both of you. I can’t believe you have the foresight to think about filming and documenting Doug as he goes through this, but some pet parent in the future will thank you for your generosity. Please take care of yourself and give a kiss to sweet Doug.
Thank you so much, Sharon. Kisses delivered!
I am speechless. What do you say to something like this….. how do you respond? I’m hoping that we all respond the way you do …. with love. Until we find a better way to express our feelings … please feel our love.
I feel it beautifully and infinitely and I really appreciate you lifting us up. xoxo
Oh my God, I’m stunned. I can’t even find the right words other than I’m sorry this is happening.
Thank you, fellow joy warrior. xoxo
I am crying for you right now; I’m so heartbroken that Doug’s time with you will be so short. All I can say is, no one could have crammed more love or joy into his life than you have, so I’m glad you found each other.
I’m crying too! Thank you so much for sharing that, it means a lot.
WTF! I am so so sorry for you and Doug. There are no words that can truly express my sadness, disbelief, and yes disappointment in the universe for this blow. Unbelievable. I can’t even think of words to type to you. I know you will do a great job with helping Doug through this, and helping others, and your grace is truly amazing. I also know that shock, disbelief, and the earth shifting beneath your feet feeling when getting a terminal diagnosis. Again, so so sorry. I am truly sorry about this diagnosis, never saw this one coming, I thought it was some crazy GI issue. Virtual hug to you both.
Thank you so much. I want you to know that I have always felt your support of my little family and that it means so much to me. xoxo
Oh no!! I’m so sorry this is happening to both of you. My heart ❤️ is aching.
Mine too. Thank you. xoxo
I am soo sorry. Big hugs to you both from us! <3
Thank you. So much.
I’m heartbroken to hear this diagnosis. You and Doug were brought together for a reason. You have given him the best life possible and will continue to do so for as long as it’s possible. You will make certain he experiences joy.
Sending you all the love, light, and positive vibes I can.
Thank you so much! Especially for being here with us.
Let me preface this by saying I don’t swear. But…what the hell does the universe think it’s doing here??!!??!! This is just wrong. I echo everything that Ro said above.
You have an army of friends here who would do anything you need. Call on us.
“Lastly, and way more importantly, life is not meant to be measured in length. A long life is never the given. Instead, it is to be measured in width and depth. Doug’s life is infinitely wide and wildly full of joy, and I will never allow for anything but that for him.”
And this is why, my dear, you are one in a million. Well, maybe one in several thousand, as a lot of us have learned through Melvin and Jake, and now with Doug, to live that way with our beloveds. Love not only lives on – it spreads through people like you who help people like me love more.
But still – dammit all!!!
I love you. Thank you for stepping outside your comfort zone and throwing out some curse words! I love the little joy army we have and I’m so thankful for you. You have always been here with us and I want you to know I feel it. xoxo
Much support and love to you and Doug. 😘🐾❤️
I’m so sorry to hear this! You have the biggest, kindest heart, and somehow the Dog Gods must know that you will take care of the neediest most special dogs. Doug is so lucky to have you!
Thank you, so much. ❤️